The last 48

So... Thursday morning (to clarify, this was the middle of the night morning), I woke up, DRENCHED in sweat. Like, crazy wet. Pillow soaked through, sheets wet, even down by my feet.  It was bizarro. Because it was the middle of the night, and I was exhausted, I was able to freak back asleep, but when I woke up in the legit AM, I told Judy what had happened, and we had Instant Laundry Day. I didn't think much of the fever, outside of needing fresh sheets on my bed. Thursday was the first day I was at all hungry, so I'd had all kinds of hope that I'd turned a corner and was getting better.

You know me and me unrealistic hope in things that cannot be true. (This damn optimistic spirit can be a real kick in the pants sometimes.)

Anyway, I ate breakfast, but then got back in bed. Katie and Judy left to go shopping just after 11, and I fell asleep shortly after they left. I slept until 1 or 2:00, and woke up warm and out of breath. Did it click that I probably head another fever? Nope. I got up to make some lunch, and head to sit down to rest twice in the process of making myself a bean burrito. (Don't judge. I had to open the beans, and I have a manual can opener. It was really hard work. ... Insert eye roll here.)

After eating and showering  (a 2+ hour process, all told, because I was so out of breath that I could hardly move without winding myself), I was back in bed.

Don't worry about how I still hadn't even thought about checking my temperature.

Steve came over around 4:00. By then, I was in bed, so he came back to lie down beside me. Katie and Judy left to run another errand, and we slept until about 5:30. I had been cold, so I was under the covers and Steve was above the covers, next to me. I'd been dozing in and out for the hour he was there, and was out when he woke me up, rubbing my arm to get me to respond, because he was certain there was something wrong with me. The heat emanating from my blanket covered self had woken HIM up. He went to get the thermometer, and... yeah, there was "something wrong".

I had a temperature of 103.5.

I got out of bed, tossed the blankets, took some Tylenol and set out to prove that I could get the temp to drop.

Thirty min later, I was at 103.3. ... Not a significant drop. By now Kate and Jude were home and up to speed. They all agreed to give me another 30 min.

103.4, half an hour later.

So, at about 7:00, Thursday night, the caravan to the hospital began. (Any fevers over 100.4 send you straight to the ER when you're on chemo.)

We were in the ER for almost 8 hours, while they ran tests to find the infection that was driving the fevers, to no avail. I mean, it's good that I don't have a UTI, or a blood clot in my lungs, or the flu. But I still have these wicked fevers that keep spiking for no apparent reason. The ER doc decided to call it "Neutropenic Fevers", prescribed fluids and an intravenous antibiotic and shipped me up to the oncology floor, where I've been since about 3:00 in the AM, Thursday night/Friday morning.

Steve's spent the night with me both nights, and Judy sleeps at my apt in the night, then comes here in the day while Steve is at work.

They still have NO IDEA what's causing the fevers, but just since I've been here, my blood has gotten worse. Thursday, my platelets were at 140 (should be 700-1400, or something like that). This morning, they were at 70.

I've been on constant IV fluids to keep me hydrated, and an IV antibiotic to fight whatever mystery infection that's keeping me sick.

Really, I don't feel much worse than I usually do at home. Maybe a little more tired, because I have people checking vitals every hour on the hour through the night, so I can't get solid sleep. Definitely more cranky, because I just want to go home and get in my own bed.

I'm resigned to at least one more night, because the rule is that I need to be fever free for 24 hours before they'll let me go home, and my last fever broke in the middle of the night. It's pretty annoying, but there's nothing I can do outside of drinking a lot of fluids and not over exerting myself. So, I'm doing and not doing those two things.

Other than letting ya'll know that I'm here, with no apparent reason to be here, outside of the fevers that will not die, there's not anything new to report. Should you feel so inclined, I'm currently accepting prayers, well wishes, juju, good energy and intentions specific to keeping my fever down. And heck, if you'd like to throw in a line about how the doctors will be able to determine the root cause of all of this, that would be fine, too.

The Red Devil

And that, kids, is how *Doxyrubicin/Adriamicin got its nickname. 

It wasn't this bright a red when I got it last time, because it was diluted in saline to go over several days. This is a hardcore bolus dose (outpatient) that takes about half an hour to push. 

I only wish I'd thought to take my phone into the bathroom with me the first time I peed after the infusion, because I am telling you... the toilet looked like it was full of Hawaiian Punch! (Oh, well. There's always next time, right?)

To prevent *fingers crossed* some of the more heinous side effects I had on this drug last year, I have an infusion on Palifermin once a day for the three days preceding chemo. (I had thought it was one infusion 72 hours before chemo and one infusion 72 hours after. That was a communication snafu. It's an infusion the three days prior, then chemo, then Neulasta the day after.) So, last week looked like this: Tuesday, Wednesday, Thursday - spent a couple hours every day at MDA for the premed, Friday - three and a half hours at MDA for chemo and other associated meds, Saturday - spent about half an hour at the hospital, getting the Neulasta shot. 

Here's how the side effects have been: intense nausea, with some actual vomiting thrown in for good measure. (I've thrown up more in the last week than I have in the last year, put together. It's been such a blast.) I'm crazy tired, and unbelievably weak. I have joint pain and abdominal swelling, and yeast infections in my mouth and otherwise that predate chemo of last week, so that's been a real treat. My head hurts and my teeth hurt. I have a new pain in the front of my left ribcage that I'm still hoping it's temporary, but I've had it for almost a week now, so.... it may just be a new thing. 

The good news is that I don't have mouth sores. (Knock on wood that it's not just that they haven't shown up yet!) And that's what the premed is supposed to help with, so it looks like it's doing its job. Halle-freakin-lujah!

All in all... I'm alive. And I woke up hungry today, for the first time in a week. So, that's a win. I'm crazy tired, physically, emotionally, mentally. I'll be okay for a while, and then my brain gets foggy and I can't remember what I was doing or talking about. That's so frustrating that I don't even have words for it, but I'm hanging in there and hoping that the fog will lift just a little in the next couple weeks. 

It's not easy. In fact, it's hard. Crazy hard. And sometimes I feel like I'm living a hell that is straight up indescribable, but I think that life is worth it. So, I keep going. One foot in front of the other, one nausea pill and one percocet at a time. 

*I'm not sure what it says about me, but I'm finding a certain level of comfort in having learned that the red devil dose for sarcoma is 150x the dose given to breast cancer patients. Not to minimize the hell that is the breast cancer dose. Any chemo is poison and is going to wreak havoc on a body, but part of me is seriously proud of my sick and weak body for taking that crap like a champ. A bedridden, drugged up,  sick and weak champ, for sure. But I'm still standing. (Uhm... figuratively.)

Guess who's getting three new purses?

Go ahead and call me Pollyanna, but I have to focus on the upside of a scan that revealed three new tumors.

... In my lungs.

And that upside is that I buy myself a Coach bag (from an outlet store, and on clearance, so don't worry about me spending a fortune) for every tumor. (C is for Coach. C is also for cancer.) So... three new purses is something to celebrate. (No, actually, it isn't. I shook my head at my own bad sense of humor at that.)

When we first saw the scan, I was so happy to see that big, black, hole in the middle of my GIANT tumor. I had been so hopeful that the last chemo would work. I had been hopeful that it had been working, that the explanation for all of the pain - that the fiery, burning, sensation I had through the entire first round - was the cancer dying.

Well... the pain may well have been the tumor dying. But it's the opinion of the doctors that it was the tumor growing so fast that it couldn't maintain its own growth, and that's why the center of it died.

Yup. Necrosis. It's been my vocab word of the week. 

It doesn't appear that the center of the tumor dying has slowed the growth down. (Or, if it has... thank heaven! Because it's still a beast, and I have a bump coming out of my left side that's made it all but impossible to find a pair of pants that doesn't make me want cry.)

Here's a side by side of this week's scan against the January scan.

My infamous rib-breaking tumor has grown from 7.3 x 3.9 cm to 11.2 x 8.4 cm. And like almost doubling in size isn't ominous enough, the SUV has jumped from 14.7 to 23.1. That's a 57% increase, kids. And it's scary as hell, because the SUV score indicates that this bad boy is active enough to have soaked up a whole lot of the contrast. It's white hot compared to January's yellow glow. 

I hate it.

And speaking of things that I hate.... Here's a shot of one of my three new friends.

I'm going to name them Larry, Curly and Moe. (Because I've always hated The Three Stooges, and I hate these tumors, too.)

It's important to note that I don't have lung cancer. It's liposarcoma, metastasized to my lungs. In the words of my PET, "There are at least three new hypermetabolic parenchymal nodules."  There's no need to biopsy them, as I'm already in treatment for cancer. I'll be starting another new regimen next week, and while I am hopeful... I am also scared out of my ever lovin' mind, because I'm going back on Doxyrubicin (aka: Adriamycin, aka: The Red Devil). The last two treatments that I've done have been brutal. They've made me take to my bed for days at a time, they've sucked all of my energy, they've taken my memory and my ability to put sentences together properly... they've been wicked. And they're still a walk in the park, compared to what I did last spring.

It will be a different blend. Last year, I did Doxyrubicin + Ifosfamide. The Ifos has kidney impact, which is why I was in the hospital for almost a week with every infusion last spring. This regimen will be Doxyrubicin + Dacarbazine (which was, ironically, the "hard" chemo in the mix I took in November and December... now it's going to be the easy chemo), every 21 days. To try and prevent the mucusitis/open sores throughout the entirety of my digestive tract issue that I had last time, they'll give me Palifermin as a pre-med and a post-med, 72 hours before and after chemo. It'll be a few more trips to MDA the week that I get chemo (Tuesday, Palifermin - Friday, chemo - Saturday, Neulasta - Monday, Palifermin), but I'm hopeful that the pre/post med will help my body withstand the chemo, and will lighten my side effects.

I'm still scared out of my mind about doing this drug again, but... I'm hopeful that a different blend, plus a different delivery method, plus the pre/post med will help my body do what I have to do, and that this blend of chemo will be effective.

Outside of getting some pretty not awesome news at the doctor on Wednesday, the trip to Houston was good. It was the first time Steve and I have ever gone out of town together. He was a trooper and a half, pushing my wheelchair all over the airport, and then all over MDA campus for all of my appointments. He made sure I was as comfortable as I could be, from physically holding me close to his chest on the shuttle ride to the hotel, because the bumps in the road were jostling me and the movement hurt my rib, to making sure I had enough pillows and a fluffy comforter in the room. When I couldn't swallow the eggs and sausage that he'd gotten me for breakfast, he ate them for me and then went to find me some cereal. And when my poor motor skills meant that I couldn't hold onto my bowl of cereal and I spilled it all over myself and the booth we were sitting in, he calmly moved me to another table and went and found me some more cereal. Traveling was hard on my body, but it was good for my soul to be so well taken care of (and to get to eat wings at the airport on our way back home)!

It's almost March!

Like, tomorrow. Tomorrow, it will be March.

I have no idea where this month has gone!

Oh, wait. Yes, I do.

This month has gone to... chemo. I've been hanging out in bed, flat on my back (because something has changed inside of me and I can't lie on my right side anymore... the broken rib banned me from my left side in the fall, but the right side is a recent change, so it still makes me crazy on a regular (read: nightly) basis). And I've gone to acupuncture and the cancer shrink. And to Jo's for dinner once this month, and went to Logan's with my Crossmen the night before I did chemo again.

Oh, and Maggie was baptized. I left my house the weekend of her baptism. ... But, uh... that's about it.

So much for this "mild, with very few side effects" chemo that I've been on for the last two rounds. Ha!

I mean, this second round has been ABOUT A THOUSAND TIMES BETTER than the first round was. I had fevers and pain that I've NEVER had on anything else, and the nausea... oh my gosh, it was brutal. Homsi changed my premeds on this last round (flipped Zofran out and replaced it with Emend). Best move he's ever made in his professional life, I'm pretty sure, because I could control the nausea in that first week after the infusion... not something I could do with the first round. The pain is still... bad. (I mean, you guys. It's crazy.) And the fatigue is still... all consuming. But I upped my (don't worry... it's all legal) drug usage at the end of that first round, which has helped me sleep through the night. Being able to sleep has made a world of difference with the residual pain. So, it's still not awesome. I'm basically never NOT in pain these days. I don't love it, but the last two weeks have been monumentally better than the three before that were, so... I'm hoping this chemo is working, now that I don't think it's out to actually kill me with abdominal pain anymore.

(I like to think that the pain is the cancer dying. ... It may be a lie that I tell myself, but I don't care. I can't get it to go away, so my coping mechanism is to think that I have this new, special, pain inside of me because that's the tumor(s) last stranglehold. We'll see.)

Which brings me to... this is scan week.

Yes, I just had chemo two weeks ago. Yes, tomorrow is Day 14. ... And yes, we're flying to Texas tomorrow. On Day 14. To have a scan done on Day 15.

This was not my idea, fyi. Because this chemo is "mild, with very few side effects", Dr. Z wanted me to come at the end of my second cycle so we could know it it's working asap. (My gut feeling? She's pregnant and is due in March. I'm pretty sure I'm traveling now, so I'll be able to see her before she goes out for maternity leave. I think she's cramming as much in as she can before that baby comes. And I love her, so... whatever. Also, this will keep me on track to have chemo next week, so I'll stay in a true 21 day cycle and not go a full 21 days without any chemo in my system... like I did between the chemo I did in Nov & Dec and starting this at the end of January.)

Steve and I are flying out tomorrow morning. All of the tests and the follow-up/results appointments are on Wednesday. (Should a real winner of a day. ... Insert eye roll here. ... I'm tired, just thinking about it!) So, I'll post something Wednesday afternoon/evening with an update on whether or not this cocktail is doing something.

It's a little trippy to be doing medical travel with someone who isn't Judy, but... it was brutal to be there without him in December, and I'm not doing that again. So, he's coming. And I'm glad.

Come back in 48-72, and I'll have an update (and probably some awesome tumor pics from my scan... who doesn't love those?) on what's coming next.

Happy anniversary to chemo and me

February 4th is...

February 4, 2015 was the day I started chemo. 

Happy freakin' anniversary!

Last night, for kicks, I did the math: 466 hours. That's how many hours I've spent hooked up to a chemo drip in the last year. (And I took just over a six month break.)

It hasn't always (or... uhm... ever, frankly) been fun, but I'm still here. 

The good news? The damage to my nails from the first four rounds has almost grown out. Another month or two, and the soft and flaky part of my previously super human nails will have grown out. Woot!

The not-so-good news? This is what my skin looks like, 10 days into this new regimen. 

And that's WITH copious amounts of super expensive lotion, applied daily. My body is falling apart. Literally. 

The last twelve months have been doozies. Chemo's turned my life on edge in a way that I couldn't have possibly prepared myself for. It's been an unspeakably difficult year, but I'm grateful for modern medicine. Even as I spend our anniversary in bed with a heating pad on a broken rib, I am grateful for multiple doctors and several chemotherapies that have been successful in other patients with my diagnosis. 

Hope springs eternal that this time next year, February 4th will be chemo-free for me. That my nails and my hair and my skin will be restored, and that some version of this drug that I hate with my whole soul will have, at the very least, stopped the growth of the tumor that is currently trying to kill my body. (I mean, I'd take total eradication in a heartbeat, but... I'd also be pleased as punch if it would just stop getting worse.)

Side effects

It's always a good time when a girl starts a new chemo regimen. The foray into the unknown is such a fun adventure. (Insert eye roll here.)

I'm at the end of Day 5, and this is what I now know about this new drug:

Worst. Nausea. Ever.

As in E-VER. (Please consider this is coming from the woman who was on anti-nausea meds for months in 2010, aka: the girl who could barely keep down 4 carrots at a time during radiation.) 

Luckily, I have multiple prescriptions for nausea meds, so I'm able to overlap and take something every four hours. But man... the nausea is wicked. It's a force to be reckoned with, and is so strong that it will wake me up from a dead sleep an hour before it's time to take a pill. It's completely insane.

Besides the nausea, I've had this real awesome full body ache thing going on. Like the flu, but 52 times worse, because the aches are combined with all-over fluid retention and swelling that is out of this world. 

At the end of Day 5, I can feel my collarbone again. So, that's movement in the right direction. (My face is still swollen and puffy, and the back of my head looks like a marshmallow... again, with the fluid retention.) But I'm starting to see the swelling recede, and now I can lie on my right side, which gives me an option for sleeping.

Word on the street is that nausea is the #1 side effect for this drug, and that it gets better in the second week, with little to no side effects in the third week. (Please know that I am laughing, even as I type this, seeing as how I'm still seeing side effects from the last chemo in my daily life... and it's been more than a month since my last infusion on that regimen. But whatever.)

Trabectedin, Round I

Okay, so... totally unrelated to chemo, but look who I ran into again in the halls of MDA! It's Gimbel and Amanda! Best surgical team, EVER! I did the math today, and... four years, three surgeries, five tumors (of nine, so Gimble holds the title for majority of tumors pulled), one kidney, one spleen, 5 cm of diaghram, I-don't-even-know-how-many-feet-of-bowel-reconstruction, one MASSIVE hernia repair, and one stragegically placed port (placed low, so I could still wear shirts with wider necklines... I get claustrophobic in high necks, and I get gaggy when I can see a port that's placed right on a collarbone, so dude did me a solid and put that puppy in low).

Gimbel is The Man! I so love him and Amanda. I love them for saving my life, for sure. But I love them even more for always treating me like a person. I've heard so many "Surgeon/God Complex" horror stories, but I'm so glad to say... I've never experienced that. Ever. With any of my surgical staff. I looooooove them!

For those of you who know how to read a blood work, report... Yes, I started chemo with low a low red blood cell count. But don't worry, when I pointed that out, I was told, "It's barely low for a normal person, and it's not "oncology" low." True story. (Love me some oncology nurses.)

What do I love? 

Acupuncture treatments DURING chemo. 

That red needle in between my eyes? It's to help with anxiety. And I am here to tell you... IT WORKS. I took an ativan at 7:00 this morning. Aaaaaaaand... that's it. I haven't felt remotely itchy or obsessive since acupuncture. (And I'm here to tell you, I had some major concerns about this 24 hour chemo drip before I got stuck. Say what you will about acupuncture being hippy dippy and weird, it has saved me. In so many ways!) I loooooooove acupuncture! 

Please allow me to introduce you to my little friend. 

This is Handy Mandy, the Chemo Clutch.

(Yup, I named her. Because I name all of the things.)

She's full of poison and has a mind of her own, so don't try to do anything off schedule or she'll screech at you. (True story.) We have a love/hate (mostly hate) thing going, but I'll be happy to upgrade that to a for sure LOVE in six weeks, if science can prove to me that packing around my own chemo in a harness-like contraption that's a combination of purse, fanny pack, backpack, and... not fashion forward in the very least... has kicked this (these?) tumor (tumors?) trash.

Remember how I had a hotel reserved for tonight, so Judy and I could stay close to the hospital and I wouldn't have to have a sleepover with the chemo in my actual house? Welllll... let's go ahead and downgrade that hotel-with-an-H to a motel-with-an-M. Fast. And let me tell you straight up that, upon arriving on the scene of the motel, I decided my life was worth more than whatever peace of mind that I thought I was buying myself with that $75 room. Luckily, their cancellation policy let me have through 6:00 PM (on the supposed night of the stay... that should have been Clue #1) to bail. So... call made to the motel, followed by website visited and online cancellation requested, and then follow up/confirmation of cancellation phone call was made to corporate, since the motel mgmnt couldn't confirm cancellation. (Methinks local management really wanted to sell at least three rooms tonight. Sadly, they're not gonna break two.)

And then I brought the chemo home for an overnight. It's really not so bad. (Don't worry about how I ran through over 3 hours just sitting at MDA, because I had to make sure I knew all of the sounds of the pump, and had to make sure I couldn't taste or smell the chemo, etc.)

This would be my **port access.

Please pause and take a look at the butterfly clip. 

Sort of cute. Also, sort of gross, since butterflies are, at best, worms with wings, and this little girl is hovering over a one inch needle, but whatev.

Now, let's pause to thank my surgical team for throwing my port down so far that it's almost like it's not even there. I won't lie, it's a little tricky to access sometimes, because it's not right against bone like they usually are, but Gimbel did a good job in burying it so I rarely see it when I'm fully clothed. God bless that man!

So, the port access is right at my t-shirt line, and then the tubing has been fed down through my shirt, so it exits right at the bottom of the shirt. This is how much I can see between my shirt and Handy Mandy. 

Not super grotesque. I can handle a couple feet of clear tubing, with a clear liquid running through it.

And this is what Handy Mandy looks like on the inside.

Slightly more grotesque. (I love the zipper that keeps all of her poison where I can't see it!)

Sort of like a bomb. ...*Maybe.

The chemo sits on one side. I'd show you the bag of gross, but... it's gross. Plus it's already strapped in, and I'm not running the risk of taking it out and then not being able to get it back in at the right angle. (Mandy would scream about that. I promise.) And the pump sits on the other side, keeping track of how much poison has been pushed, and how much is left to go.

The real beauty of Handy Mandy the Chemo Clutch is that she, A) holds the bag of poison, so I don't have to actually see it in its full grossness, but also B) the pump is held in such a way that I don't have to actually unzip Mandy to get the low down. There's a handy little velcro window that I can open to see how many ml's are left, and/or see what error message is running across, should something go wrong with the plan and Mandy starts getting vocal.

All in all, it seems that this 24 infusion/chemo sleepover isn't the worst thing ever. (That said, the sun just went down and I'm only 8 hours in. I'm pretty notorious for my night time freakouts, so anything's possible. But... so far, so good.) I think it'll be okay.

*I only know what bombs look like from watching TV. So sue me if I've seen that episode of Blue Bloods with the dirty bombs in NYC so many times that now I think all things that are black and have wires attached look like bombs. No judging.

*Yeah, they used my port instead of IVing my arm. Halle-FREAKIN-lujah! Texas had told me that the port isn't in stable tissue, so I'd need an IV for outpatient chemo. Interestingly enough, Arizona says that a port is a bazillion times (or, "much") more stable than an IV. So, port. Thank heaven! (Don't worry about how I keep talking myself off the ledge that something's going to go wrong with the theory that Mandy will scream bloody murder of she tries to pump chemo in and my line doesn't immediately move it through. Deep breaths.)

Taco Bell/Head Painting

For those of you who don't know... Taco Bell is my meal of choice on the night before I start chemo.

Every round, I've had Taco Bell as my final meal before going in to get back on the juice.

So, tonight, it made the most sense to have Taco Bell, chips and ice cream for dinner at the Woods' house. With Kirk's family. And some head painting. ... Because I am, pretty much, the coolest cancer patient around.

Call it a blank slate, a bald pallete. Whatever you want.

We call it a good time. From youngest to oldest:

Kirk

Russell

Hazel

Monson

Maggie and Hazy

Dad's getting in on the action (and Cili's taking up permanent residence... watch for her in, pretty much, every single picture from here on out through the night... girl got seriously addicted to painting my bald head!)

Dad, me, Hazel, Maggie and Sally

Jo and Kirk, taking turns

Jo takes her head painting VERY seriously! 

(Whereas, I, clearly... do not. I got mocked tonight for my need to smile for EVERY picture. Who doesn't smile when they know their picture is being taken, is what I want to know?!)

Roomie, being hilarious. ... Or, uhm... ruling. (Whatever.)

Cili

Mag

Sally

Judy

Brett

Brett and Kirk both having some good times.

Another one of C and me

I can't believe we didn't get a shot of the other side of my head! (Because, I'm telling you, it was pretty sweet. Complete with a bucket of Blue Bell ice cream, courtesy of Russelbear, and other smiley face, since Jo and Kirk were, apparently, painting the exact same thing at the exact same time.)

It was a good night. I'm full of tacos and Sun Chips and rocky road ice cream. I'm so grateful that Jo and Dean totally let me invite my family over to their house whenever I want, and I love that there's an activity that all of the kids (both those who are actually young, and those who are young at heart) can get into.

The painting of the head is something I sort of stumbled across last spring when Hazel (jokingly, or maybe not...) asked if she could paint my head like an Easter Egg. (I love kids and their crazy imaginations.) Whatever it takes to make the kids okay with the baldness... it's the greatest equalizer ever. Cili, in particular, has always had a hard time with my baldness. (Sally, too. But it's hard for C on a different level.) But tonight, she was the one person who could not get enough of painting the fuzzy head. Two words: Worth it.

Whatever I can do to make the cancer, and the baldness, more fun. Not just for me, but for everyone else in my life.

Breaking news

Chemo's been moved from today to next Monday. The reason for this is the 24 infusion, that has to be outpatient. (Gag me with a spoon. Because the one thing that I dread more than having to have overnights in the hospital for chemo EVER AGAIN, AS LONG AS I LIVE is BRINGING CHEMO HOME WITH ME FOR A SLEEPOVER.) I'd asked if they could run it inpatient, to avoid the trauma of having a chemo bag either in or hung near my bed, but the manufacturer recommendation is to administer the drug outpatient. Which means that, unless there's another reason to admit me (and sky high anxiety doesn't count... trust me, I asked), the cancer center/hospital won't get reimbursed for the drug by my insurance company of they don't follow the recommendation to a T.

So, I'm doing a 24 infusion. Outpatient. With an IV in my arm, because the port isn't "stable enough" to do in-home chemo. .... The good times keep rolling.

And Homsi knows me well enough to know the anxiety I have about... uhm... all things needle. That, plus the fact that I'll have to return 24 hours later to have the pump removed, just moved me from a Friday start (where I'd have to go to the hospital over the weekend for both needle removal on Saturday and the Neulasta shot on Sunday) to Tuesday  (where both set-up and take-down of the IV and chemo bag will take place at the cancer center, and the shot 24 hours later, will be done by staff who knows me).

It's not a perfect situation, but it got rid of my hospital anxiety. And it bought me another weekend, chemo-free. (Not that I have the energy to go anywhere or do anything weekend-specific, fun-wise. But it's five more days without the harsh side effects that come of being IN a cycle, so I'll take it.)

I've been asked if I'm freaked about yet another chemo delay. And, I won't lie. Sort of, I am. Tuesday will be three weeks, aka 21 days, aka one full chemo cycle missed since my last treatment ended. And yes, that wigs me out on some levels. The time of chemo missed could skew the results of my next scan, because that tumor is really likely to have growth in that three week period. But... the reality is that I did two rounds of treatment with a regimen that didn't work, and it's been two months since that failed attempt started. (And, let's get real. I was seriously thinking about doing two more rounds of that, just to officially rule it out as an option.) Given that perspective, five days without drugs really isn't that big of a deal.

And the time off gives me time. To think. To eat more Taco Bell. To spend time with the kids in my life, when I feel good enough to do crazy things like having another head painting party. (Be looking forward to pics of that!) To eat wings and drink soda and binge on popcorn and peanut M&M's. To sit and talk with friends, to (hopefully) finish one of my projects at the bank.

Five days isn't a big deal, but it also sorta is. And I'm choosing to think about all the stuff I can do and enjoy over a long weekend, rather than focus on what could be happening inside of me that five more days on chemo may have been able to affect.

There has been a calm in the storm

Kids, I have a treatment plan. Trabectedin (Yondelis is its other name). It's the soft tissue tumor drug (specifically designed to work on myxoid liposarcoma - liposarcoma with tumors originating in the leg - but has shown some success with de-diff retroperitoneal liposarcoma as well) that was just approved by the FDA in October, 2015.

What I love about it: I'm getting a drug that was created for my cancer. I mean, I'm actually sort of giddy about that. I feel like a breast cancer patient, with a drug that was created for MY cancer! (Which sounds like maybe I'm not honoring the difficulty of a breast cancer diagnosis, or the treatment thereof. That is absolutely not my intent. I hate all of the kinds of cancer. Any diagnosis, all treatments are incredibly difficult. I mean, it's just a seriously crappy diagnosis to live with. And as if the disease itself isn't bad enough... the cure can just about kill a person.)

I'm just so grateful that there is finally ONE drug that is specific ONE form of liposarcoma, that is was approved last year, and is available to me now. This is one trial that I won't have to worry about getting accepted into, because it's already been approved. Such a blessing.

What I don't love about it: It's a 24 hour infusion. Which means that I'm either going to have to go back to the hospital for a sleepover to get my chemo OR they're going to have to strap a bag of chemo to me and I'll have to bring the poison into my own home/bed for an overnight. Both of these thoughts are horrifying to me, though I would err on the side of inpatient, for about 1,000 reasons, not the least of which is that my hospital anxiety is just a titch lighter than my bringing-home-a-bag-of-chemo-with-an-IV-in-my-arm-because-the-port-isn't-deemed-stable-enough-to-deliver-the-drug-without-around-the-clock-care anxiety.

Deep breath. (Let's all pray for an insurance approval for inpatient chemo, so I don't have to go through a normal person's entire week's worth of Ativan in one 24 hour period.)

I also don't love that it, well... has an approximate 10% effectiveness rating.

But listen, I read the study that Homsi gave me on the Gemcitabine+Dacarbazine, and it was 12%. So, it's not like I'm selling myself down the river with that 10% chance. ... And all I have to be is in the 10%. (With everything else that's weird and freaky about my case, it could well turn out that I'm not in the 90th percentile.) Fingers crossed.

I don't have a start date yet. Texas has to write sample orders and get them to Homsi, then the pharmacist has to order the drug (it's so new, and this cancer is so rare, that it's not in stock), and my insurance needs to pre-approve the meds (oh, right... and a hospital sleepover) before scheduling can call and let me know when they'll get me in. I'm hoping to get through the weekend, and start up again on Monday or Tuesday of next week. When I have that start date, and an answer as to inpatient v. outpatient, I'll for sure let you know.

It's, basically, hurricane season over here...

Yeah, the wind is still blowing.

I didn't hear back from Texas today, so I sent a lovely, *long-winded, including all possible questions I can think of today (with a disclaimer that there may be more tomorrow, when she calls back) email to Zarzour today.

*No pun intended. (Ever.)

I totally get that she has a bunch of other patients and the days are long and busy. I get it. I, also, have a job and totally know how time can get away from a person. And, while this is my life to me, it's... not that to her. And that's okay. Because no one else's mortgage has ever been my mortgage, and I've totally forgotten/neglected to return a call in the same business day.

But still. I seriously cannot make a decision about what to do next without knowing if this is an instance of her not having thought of this drug combination as a possible for me, or if she meant did think of it and maybe even mentioned it in passing, but didn't write it down on the card with the other treatment options... or if it's something she didn't suggest, because she hasn't seen it work on liposarcoma.

Now, I will say that I read through the Phase II trial report tonight, and they did include 9 liposarcoma patients in the trial. (12% effective rate) So, maybe she's seen it work. (And one can only hope that the Phase III saw this work at least 13% of the time...)

That said, I'm telling you straight up... you guys, don't read through trial reports. Esp if you have a rare cancer and want to think you have a chance in hell of beating it. That wasn't light or fun reading. At all.

And now, I'm even more itchy for a conversation to either green light this drug or put a full stop to this possibility. I need to get my sick body back on chemo, post haste, and not knowing if this is a viable option is currently holding me back.

Also, I'm officially out of peanut M&M's. Here's hoping I can make it through the night. (Double dose of Ativan, coming right up.)

The wind is still blowing

Remember how I said I'd post again once I knew which way the wind was blowing? Well... I don't actually know which way it's going yet, but it is kicking up a storm, so here's an update.

I saw Dr. H this morning. He advised that he had talked to Texas about treatment plans, but said she didn't really recommend anything specific, that it was a lot of, "You could do this, or you could do that." He came out of the conversation confused and frustrated, because he was expecting direction, and all he heard were options. He asked if that's how she'd been with me, too.

I relayed that she had been a little bit like that with me, but it was because I had a total freakout on her when she suggested that it was time to go back to the Doxirubicin (Adrimycin, "red devil" - all the same diff) regimen. She knew I'd had a bad experience with that drug, but didn't realized that it would cause me to have a high-speed-come-apart, just talking about going back on that chemo. (Cancer treatment PTSD. It's a real thing, people. ... And I hope you never have to know what I'm talking about, because it is hell on wheels.) But I just can't even think about going on that drug again without knowing that I've exhausted every other possible avenue. So, as I told Homsi today, that is when she started sort of thinking out loud with what options I had (keep doing what I've been doing, maybe try the Trabectedin... but only if I could get access to it in Arizona). We talked, long-term, about how she'd change the way the delivered the hard chemo, to see if she could decrease the likelihood of the mucositis happening again. (Look up that word if you're feeling real brave. Then know that mine was so bad that I was landed in bed for weeks, unable to move, because the sores and swelling lining my entire digestive tract was so bad that I couldn't even roll over in bed without searing pain. And don't even get me started on having to poop...)

The point being, when Zarzour initially talked to me, she had a recommended treatment option (on no level did I think she was up in the air or all over the place), until she realized that just talking about her recommended treatment plan was enough to send me to an early, anxiety-induced, grave. And that's when she gave me options.

I explained this to Homsi, which I think (I hope) helped him feel better about Zarzour not having been specific in her conversation with him. He asked me what I wanted to do. I told him that I had thought about it and would prefer doing another two rounds of the Gemcitabine/Docetaxel over going straight to the Trabectadin, with the thought process that it would either show stabilization in my next round OR it wouldn't, and that would prove that it doesn't work for me and I could effectively cross that chemo combo off my list of possibilities.

Homsi wasn't... in love with this idea. He's quite certain that the tumor growth has been over the last six weeks (read: not in the two weeks between the scan and starting chemo), and that doing another round of the same thing would not be a wise use of time. Not that he thinks I'm dying RIGHT NOW and time is of the essence or anything. Quite the contrary, both he and Zarzour have said that I'm actually pretty stable in the progression of the disease and now is the time to try to lighter/easier chemos. Homsi went so far as to say today that there is so much gray in my case, that it's hard to treat, because there is no one obvious course of action that has to be taken right now.

That said, he recommended a possible fourth treatment option. Staying with the Gemcitabine as a binder, but adding Dacarbazine (getting rid of the Docetaxel). It would be a 14 day cycle, instead of 21. So, the cycles would be shorter (this is both good and bad), but it would be going in for chemo just once every 14 days instead of twice in a 21 day cycle. He's given this combination to many patients (and gave me some medical journals as light reading as support), and has seen success with his own patients. I asked if he'd seen success with liposarcoma in particular, and he told me he hadn't used it on liposarcoma yet, but assured me that he had seen success with other soft tissue sarcoma patients.

So... now we have a fourth option in the running. I need a day or two to think about it (and I would like Texas to give me some input). As much as I'm happy to hear that there's another drug that has seen success with with sarcoma patients... I'd really like to hear that someone has had personal experience with treating a liposarcoma patient before I sign up for this.

Hopefully, I'll hear back from Zarzour soon (like, maybe she'll call from home tonight, or first thing tomorrow morning? ... when I dream, I dream big), so I can get another medical voice chiming in.

I am grateful for the time off chemo. I'm really tired, but I'm thinking more clearly and I have less pain now that I don't have current chemo in my system, causing swelling and shooting pains in my extremities. At the same time, every day I go without getting back on a treatment plan is a day that there isn't anything that's even maybe holding these damn tumors at bay, and that's making me a little bit crazy. I know that I can only control what I can control, and doing research and reading up on another chemo is the part I can control. ... It's just that sometimes I wish I didn't have such a weirdie case of what is already a rare cancer. There are no easy cancers, and there is no treatment plan that is a good time, but some days I wish my body had gone the route of 1 million other people, and I had a cancer that was easier to treat. My kingdom for a pat chemotherapy plan, is what I'm saying. I'd love nothing more than to walk into a doctor's office and be handed a standard treatment plan. But alas, that is not to be. I get to wander the CandyLand of Cancer Treatments; right now, I am bogged down in the Molasses Swamp, but I'm really hopeful that someday soon (tomorrow, maybe?), I'll get a shortcut pass through Gumdrop Mountain. Only time will tell.

In the meanwhile, at least I have peanut M&M's to stress eat while I remind myself to take deep breaths.

Scan Week

Yesterday was Scan Day, today is Results Day, and while I'm waiting for my docs to confer and hand me down the final word on what awaits me, treatment-wise, next week, I thought I may as well throw out some Show & Tell pics from the week.

Usually, we stay at The Rotary House  (MDA's on site hotel), but my appt dates got changed two weeks out, and they are, very much, at a full to capacity status. Sooooo... I did a little digging  (that's a lie, an email came right into my inbox on the very day that I realized we'd need a different hotel) and found that we could stay at the Wyndham for about $10 less a night than our other "cheap" Houston hotel. Done! And while these digs aren't quite as upscale as their website would have us believe them to be, the beds are awesome and the pillows are fabulous  (so much so that Judy was stripping the pillows so she could get to the tags to find out what these pillows are made of, and if/where she could buy some... I kid you not)

The view from the 12th floor is nothing short of amazing. We're in the heart of the medical plaza, so there are hospitals as far as the eye can see.

And it's even better at sunset (don't mind my reflection in the window that I was trying to take a pic out of).

This is the view to the left of our room. Hospitals and hotels, ad nauseum.

This is the view to the right of our room. Total (very upscale) residential neighborhood.

Houston is so funny. There are no zoning laws here, so you'll see houses in the middle of industrial parks and gas stations smack between million dollar homes. It's kind of crazy, but I'm getting used to it.

This morning, we met with Dr. Z, and she gave us the results of yesterday's PET/CT. It wasn't what we were hoping for, kids.

Which is to say, it's grown. Not by a whole lot  (approx 1/2 a cm in one place and almost 2 cm in another), but it's grown. And it's  gone up one point on the SUV scale.

Here's a b&w from the CT pics, showing the changes in the amorphous mass in/around my small and large intestines. (11/9/15 on top, 1/8/16 on bottom)

And here's a full color (PET) pic showing that the spot on my rib has gotten just a little bit bigger and angrier. (11/9/15 on top, 1/8/16 on bottom)

There's also a small hot spot under my bowels. It was hot there in November too  (this Nov slide doesn't show it, but there was a teardrop shaped spot on that scan). Could be another tumor, could be that mass moving from well-diff to de-diff, could be that I needed to poop. Your guess is as good as mine (or any qualified medical professional).

Sooooo... not what any one was hoping for. It's minimal growth, but it's enough that it counts. (The biggest change registers at just over 25%, so it's enough that it's classified as growth. Had it been 20% or under, it would have just been a blip on the radar. Ugh.)

Treatment options:

Stay with what I've been doing for two more rounds (there's an outside chance, but still a possibility, that the growth happened in the two weeks between the November scan and starting chemo). I've tolerated this regimen fairly well, and two more rounds would either show that it IS working (after getting a late start in Nov), or it would concretely show that these meds don't work with my body.

Try the new drug that the FDA just approved at the end of October. (I don't have the name of it at the tip of my tongue. If it really matters to you, ask Google. Either way, if we go this route, I'll know the name by the time I write another post.) Possible hitches are that the drug isn't available everywhere yet. Dr. Z put a call in to Dr. H while I was in her office. He wasn't available, so she left a message for him and assured me that after they had talked, she'd call me back.

If Banner can't get the drug in Az, I could fly to Texas every three weeks to get it. ... Or we'd go back to option one to see if maybe it'll stop progression of we give it more time.

Obviously, neither of these are awesome options. But they both beat the hell out of my third option, which is to go back on a version of doxyrubicin/andromancin (the red devil). That drug, and its wicked side effects, are, hands down, the hardest thing I've ever done in my life (and, people, there have been A LOT of hard things). If it comes down to that being all I have left, I'll do it. But I just can't willingly sign my body up for more of the drug that was so brutal that it almost killed my spirit.

Right now, I'm... eating a lot of chololate.

And it may be the most expensive part of this "vacation". Seriously, $2 a pkg for peanut M&M's is highway robbery, but since this is my drug of choice when my life goes sideways, and hard, I don't even care about the price of hotel snacks right now.

But really, I'm holding steady, just waiting for my doctors to talk it over and determine which is the best course of action for now. I'm okay with either option 1 or 2, truly. This current regimen either didn't work because it doesn't work, or it's not showing that it worked because of the timing. Doing another two rounds will tell the tale. I'd love to try option 2. It's the first chemo to get FDA approval, specific to liposarcoma. (Granted, it's technically specific to mixoid liposarcoma, but they've seen some success with de-diff liposarcoma, so I'll chance it.)

As soon as I know which way the wind is blowing, I'll post again.

As always, many thanks (and so much love) to those of you who keep me and my tumor troubles in your hearts and prayers. I can't tell you what it means to me, to have so many people aware of what is happening in my guts. I love you so much, and I am so grateful. Thanks for saying prayers that,  I am certain, have lengthened me life. And thanks for making sure I always know there's a reason to keep living. Ya'll are the very best!

A slideshow of baldy pics

A couple weeks ago, I posted that my hair was falling out. Since then, I've posted pics on social media, but have been a pretty big slacker about putting anything up here. I figure it's time to make it up to my bloggy friends who may or may not also be fb fans and/or Instagram followers.

Enjoy.

Nice Princess Leia buns for Star Wars Day, eh? (Yes, that is my actual hair. Judy had wanted to keep it for a craft, so I'd been putting it into baggies as I pulled it out. The amount of hair that I lost in the afternoon of December 17th is the bun in my right hand. The other bun is all of the hair that I'd lost up to that day, combined.)

On December 19th, I decided to see what "hair do" options I had and do a photo shoot. I would take pics and then send them to my brothers. Ha! (Kirk's been hoping for some male pattern baldness. The evenness in which I have lost my hair has been sort of a bummer to him.)

The combover is still my favorite.

As cute as all those little piggies were, I'm here to tell you... I lost a lot of hair that day, twisting my hair into piggies and then pulling the bobby pins back out.

This was pretty typical hair loss for any one of my piggy dos (and there were A LOT of them). Ha!

That night, Judy and I had Panda Express for dinner, and I had to repurpose my Leia buns into Mrs. Meers. Because it's such a natural progression from Chinese food to Chinese laundry to white slavery...

Shoo show, shoo show.

Also, POOK!

And speaking of things I got "from my mother's side of the family"... check out the similarities here.

I had snapped the pic of myself Christmas Eve morning and sent it off to my cousin Julie with a note that it was funny to me how I could see Uncle John in me, now that I'm old and gray and bald. ... She sent me back a pic of John that night. Uh, yeah. No wonder I thought that wave across my forehead looked like Uncle John's! It... uh... is exactly like his. (Those Ball genes are strong!)

I'm a little grayer than I was last week, and my hair's still getting thinner by the day. I'll give it a few more days to fall out on its own before I cut/shave it off.

What I learned last time is that leaving dead hair in my head makes my scalp itchy and weird, so I'm just letting it come out on its own. It's been wildly different this time, in that it's been almost three weeks since it started coming, and it's still not gone. (Last time, it was roughly 72 hours from start to bald.) It's really funny, because it's so thin and wispy that it mostly just stands straight on end, and it feels more like duck fuzz than human hair. But whatev. It makes me laugh every day, even if it does make me do a double take when I walk past a mirror. Pretty soon, I'll be back to bald little old me. Until then, I'm rocking the toddler bedhead like none other!